Stepping Down on Tegretol SUCKS


It’s been almost a week since I reduced my dose of Tegretol from twice a day to once a day, and my body is still acclimatising.

The first day was excruciating.  I couldn’t think, had no balance, everything hurt (including my face).  My skin was overly sensitive and every sensation was unpleasant or painful.  My team took one look at me and said go home.  I sat down and did some work, but then gratefully took them up on their suggestion and went home to curl up on the couch and watch my latest high value distraction: Mind Hunter.

The second day was a bit better.  I no longer felt like every part of my body was on fire with fever aches.  I didn’t have much balance, and in fact I sat back from interacting directly with the horses during our practical session due to this, but I was more alive than day one.

I’m now almost a week in.  I’m pretty sure I’m coming down with a minor cold or something of that ilk, as I’ve got the heavy duty fever aches, extreme lethargy, and overall fogginess.  While this is a symptom of my fibromyalgia, it’s usually reserved for ‘coming down with something’ rather than ‘you’ve done too much’.

I will not be getting acupuncture this week, as my acupuncturist has had a family emergency.  I’ll see if I can get two acupuncture treatments in next week or the week after, whenever he’s back, to hit the trigeminal neuralgia hard.  It’s been acting up a bit on one tegretol, and I’d like to settle it back down.

As you may be able to see, my thoughts are still sluggish and somewhat disjointed.  I’m going to blame that on the plague rather than the tegretol, and have a nap.

Acupuncture as an Adjunct Treatment for Trigeminal Neuralgia


Since being diagnosed with trigeminal neuralgia, it went from bad to worse.  Even with the maximum dosage of Pregabalin and a thrice-a-day dose of Tegretol, the pain in my face was an almost constant 8-9 out of 10.  I like the following pain scale, because it also shows my mental state.

15 Pain Scales (And How To Find The Best One For You) |

Not only was I reeling from the Tegretol, but I was almost incapacitated with facial pain, which somehow is so much worse than pain in something further away.  I was taking huge quantities of medications designed to control this pain and it just wasn’t working.

So I put all my hopes on a blood vessel touching my trigeminal nerve somewhere so they could perform microvascular decompression, which is this really cool brain surgery where they stick a little sponge between the blood vessel and the trigeminal nerve and voila, around about 7 years of no pain!

The MRI showed up nothing.  Everything was fine.  Nothing was even vaguely touching the trigeminal nerve.  There was no explanation for why I had trigeminal neuralgia.

I had a complete meltdown.  I was really banking on the MRI showing something, and it didn’t.

The next day I booked in for acupuncture.  I have now had three acupuncture sessions, and I’m just about to go to my fourth.

After the first acupuncture session my pain went down to a 2-3.  I stopped taking my midday Tegretol, so I was down to twice-a-day Tegretol.  After my second acupuncture session, my pain went down to a 1-2.  I was moving that week, so every once in a while I would have a flare up to a 7.  The CBD Living Freeze (they don’t pay me for this shout out) has been a godsend for these flareups.  I roll it all over my face, fan the eucalyptus and menthol fumes away from my eyeballs (it buuuuuurns), and my face feels normal again!

I have a mild worming pain across my zygomatic arch right now, and a bit of a bone eating sensation in my jaw, but the consistent pain rarely gets above a 3.  As I said before, I am just about to go to my fourth acupuncture session, and once my nerves have settled down from that I shall drop my Tegretol down to once a day.

My goal is to completely come off Tegretol and regain my brain and my waistline!

This Is My Life Currently

christopher-windus-ys_PVhkEC6c-unsplashThe alarm goes off.  I groan, hit snooze, and roll over to steal some warmth from my amazing human who also doubles as a walking space heater.  The snooze alarm goes off and I whinge some more and convince myself I’m only going in for a little cuddle.  Several minutes later I get a nudge awake and I roll myself out of bed.  I stand up.

And promptly tilt over into the dresser.

That’s fine, there’s only a few centimetres between where I stand and the dresser, I’m not hurt in the least.  I stand myself back upright and lean on the bed as I grab my pants, put them on carefully one leg at a time (I’m also deeply inflexible first thing in the morning, so this is sometimes quite difficult), put my jumper and slippers on, and totter out.

My right eye is just a blur, like I’m not wearing my glasses.  My left eye works fine.

I stumble and list several more times on my way to the kitchen, but I manage to catch myself each time, usually with my feet, sometimes with my hands on a wall.  The cats yell at me to feed them.  Kettle goes on first, dog loses her shit because I’m up and that means breakfast, and the cats continue to yell at me.  They all have me whipped.

I continue to teeter my way around the house, feeding the various beasts, making my coffee, my amazing human’s coffee, my breakfast, until at last I can sit down and not expend additional energy catching myself as I start to tip sideways.  I subconsciously plan my routes to ensure I have either something structurally sound I can catch myself on, or something soft I can fall on, as much as possible.  I’m glad my floofy creature (cat, she rules our lives, and she knows it and loves it) is more interested in floofing in front of me – tail up and elegantly tipped to one side, glancing over her shoulder as she chirrups to make sure I’m following her – rather than doing a surprise floof directly in front of / under / between my feet as I’m walking.

By the time I’m seated with my breakfast and coffee my right eye is back to normal, if feeling uncomfortable (I’ve been to the optometrist who says it’s all beautiful and fine), and I spend my mornings relaxing and waiting for my body to stabilise a bit more.

Throughout all of this my jaw burns.  Well, not so much burns, as feels like it’s being eaten away.  It’s a diffuse ache with no distinct boundaries but a tapering off around a central pain.  Sometimes it’ll crawl down my mandible and into my chin.  Sometimes I’ll have flashes of sharp pain across the roots of my maxillary teeth.  More often than not I’ll have a frozen burning patch along the side of my nose.

I’ll browse through Facebook on my laptop.  My fingers will lightly spasm as I go through, so I have to make sure the mouse is off to the side of the screen so I don’t accidentally click on something.

After a little while I’ll get up, wind my way to a shower, and get on with my day.  I will have difficulty recalling things I did moments ago.  I will stumble over words.  My brain will supply me with an alternate word for the one I’m wanting, and I will have to logically work my way through an number of other words before I get to the correct one.  I will sometimes have intention tremors.

If I’m lucky, the wobbliness will be done by 10am.  Other times it lasts all day, and I will have to rely on my cane for balance.

I don’t know how much of this is the Tegretol or if this is an increasing severity of whatever is causing my trigeminal neuralgia.  Hopefully I will find out soon!

I Got Fat On Tegretol


Among the other amazing side effects I am experiencing on Tegretol (carbamazepine), such as personal earthquakes, difficulty with words, and an extra helping of fatigue, I have also put on weight.

10kg of weight to be precise, in less than 5 weeks.

I’d put on weight last year, and at the start of this year when there were three birthday cakes in a week and then two the next week at work (I can’t say no to free cake, it’s a great weakness of mine).  At the start of university I was up at about 72kg.  5 weeks after starting Tegretol, I was up at 83kg.

I have ever been the human who has been able to eat whatever she wanted and maintained a figure that had occasional family friends ask if I was anorexic.  My response was always ‘you haven’t seen me at dinner, clearly’.  This neat trick began to fade away during my late twenties, along with my ability to pack away food, and I maintained a happy 58-60kg by simply eating normally.

I went on a work experience placement to a sheep farm for three weeks.  While I was there I worked from 8am to 4pm in a physically demanding job, acting as a sheep dog, walking a three hour hike through bush on a proper off-the-beaten-track style track, hauling sheep fleece around while they were shorn, and generally having the time of my life.  In those short three weeks I toned up like nothing on earth.  I slendered down, I had guns to die for, and I was eating double what I’d normally eat to maintain the appropriate energy levels.

I don’t actually need to do a lot of exercise for my metabolism to go OH OKAY and pick up speed.

Until Tegretol.

I’m stable at 83kg.  I haven’t gotten heavier.  But despite the exercise I’m now putting in, I also haven’t gotten lighter.  I haven’t changed my caloric intake in any way, I haven’t changed my eating pattern, I haven’t changed anything except added more exercise, and I am 83kg.

The weight is predominantly on my stomach.  Every bit of my front abdomen, from below my breasts down to my undies line, is extended in a bulge.  This is not a normal weight distribution, and this is not a weight distribution I am happy with.

I’ve done a bit of looking around – there was one study on people who were taking Tegretol and gained weight (I think it was averaging around 15kg) and they only lost the weight when they stopped taking Tegretol – something that is certainly not an option for me right now.  There have been one or two people on forums who have claimed to have lost weight while on Tegretol by going extremist vegan for a couple of years – also not an option for me at this point in time.  There have been suggestions of doing the ketogenic diet – another non option at this point in time, and should be done with extreme caution by someone who is on Tegretol, as carbamazepine is metabolised by the liver, and the ketogenic diet puts extreme pressure on the liver – and doing a paleo diet.

For now I will maintain my breakfasts and dinners as is and change my lunches while incorporating more exercise into my routine.  Once my waterproof sneakers arrive I’ll be able to properly jog around at the paddocks as well (yay aerobic exercise).  My goal is to be 80kg by the time I am next on surgery!

I Have Bilateral Trigeminal Neuralgia


In my right jaw, at all times, I have deep burning ache of bone being eaten away.  It isn’t, but that’s what it feels like.  I have an ache along my brow ridge.  The area around my temples incredibly sensitive, and makes putting on my glasses hazardous.

Sometimes it feels like a tooth is being pulled with limited analgesia.  On bad days, my zygomatic arch burns.  Sometimes the side of my nose gets a sharp stab.

Now on my left I have occasional flare ups of sharper pain coursing down my jawline and along my zygomatic ridge.

I am currently on 600mg pregabalin (300mg twice daily) and 600mg tegretol (200mg three times daily).  I’m maxed out on pregabalin, and only half way to max on tegretol, but I do not tolerate tegretol well and cannot go any higher.

Sitting around not making any faces or talking, the pain is tiring but manageable.  Talking causes pain.  Some eating causes pain.  Smiling and laughing causes pain.

It’s exhausting.  Explaining it again and again (often to the same people!!) is exhausting.  Being in pain is exhausting.  It’s never ending.

But the worst of it is the medication (tegretol) for treatment of the trigeminal neuralgia cause additional fatigue and aches!  Just what I need with fibromyalgia.

Well, I’ve gotten my referral to the neurologist, and we’re getting an MRI done (likely private, given how long it’s taking for my referral to be triaged!!), and then we’ll see what we can operate on.  Here’s hoping the public system doesn’t make me wait.